Monday, November 15, 2010

Ok. I have to admit I am such a slacker! I can't believe it has been over 3 months since I posted last. So starting today Im going to start blogging again on a regular basis. I don't know why I stopped....it really is cathartic.

There is so much that has been going on where do I start! (sorry about the fuzzy pictures---off my phone!)

About a month ago Avery started OT and PT at our local hospital. Avery is working SO hard at therapy. We are seeing some new things that give me hope that Avery could regain some strength in her arms! This is her OT, Jessica. She. Is. Amazing! Not only does she know her stuff in therapy but she lives it every day. Her daughter has Cerebral Palsy. So blessed to have her walk into our lives!

One of the things that we are working on is weight bearing exercises for her arms. Well it must be working because this is how I found Aves asleep a few weeks ago. Sometime in August, Avery lost her ability to walk or stand without support. Its seemed like overnight her foot went from bad to REALLY bad. 2 weeks ago Avery got Botox in her calf to loosen the muscle so we could stretch her foot out through a process called serial casting. The theory is that over the next weeks to a month her calf and heel cord will be relaxed and stretched so she can get new orthotics. The ultimate goal is for Avery to get back one of the few things in life that she really enjoyed--walking. This picture was taken the day she got her cast on. It was the first time she has stood by herself in almost 6 weeks.We also had our Natural History study appointment with Dr. Percy. They are super excited about her weight gain and overall health. And just a super sweet picture I snapped the other day of a VERY rare smile! I know Avery is a happy girl but boy are smiles hard to get!

About Me

Hi! Im Avery. I am 3 years old and am a very happy, loving little girl. I love music and t.v. My biggest enjoyment is kisses from daddy. I will raise my head so he can kiss under my chin. He calls it my "sugar bowl". I have a big brother Cole.
I was officially diagnosised with Rett Syndrome on April 7, 2008. For more information visit rettsyndrome.org